Tuesday's Tip

[DonnaBoll]

If we experience itching, it is an individual decision whether or not it needs treatment. If you itch just randomly, then likely it doesn't warrant any medication.

If, however, your quality of life is being impacted by experiencing it everyday or every night, then please speak with your doctor about treatment. I know for each of us it is surely a trial and error thing to find what works - if anything. It is up to each of us to make the decision to need any type of medication to help with the itch.

I know for me, the worst time was at night Things can always seem so much worse when you are alone and in the dark. I can remember all too vividly sitting on the side of my bed crying - asking God to make it stop.

Unless you've experienced it, no one knows what it is really like. I hope anyone feels they can ask here for suggestions to make their itching better. Or even just sharing your experiences can possibly help someone else know they are not alone.

Then, of course, there are always doctors who still don't believe that itching is even a 'thing' with PBC. Really?!

[Deemum]

hi Donna hope you’re keeping well. I get itch some nights during the night. At the moment probably only 2 or 3 times a week. It has been my arm or my feet.

[DonnaBoll Administrator in reply to Deemum]

So glad it hasn't been a big problem for you. My legs were the worst for me.

[Cumbria7]

hi Donna,

My itching was also worse at night, like you I would sit on the edge of the bed crying. The itching happened every night to the point where I developed bleeding and bruising all over my arms and shoulders. I was at the end of my tether and desperate. I tried cholestyramine but could not tolerate it due to nausea. I then tried colesavelam which had little effect. I now take rifampicin, which has definitely helped, but I’am at the stage where it will probably need increasing. I live miles away from my liver specialist in Newcastle but the specialist liver nurse rings me every two weeks to see how I am coping without this support I don’t know what I would have done. I guess my message is don’t give up there is help out there if you need it xxx

[DonnaBoll Administrator in reply to Cumbria7]

how nice that she keeps such close eye on you.... the itching can really be life altering. I know it was for me. Just like the fatigue, the itch is so often something no one can see. It goes along with when people tell us "but you look good!". I know they mean well but.....